Good Morning, Friend: A Day at School

Now that Solly is settled in at school, we’ve been working on moving his therapy appointments to during school hours so his therapists can work with him in his classroom. This helps his teachers learn about some of the things he’s working on, but also teaches his peers more about Solly, like how to best communicate with him. While parents have the option to come back to the school to sit in on therapy appointments, we recently discovered that Solly can focus better during therapy if we aren’t present, so we’re starting to limit the appointments that we attend.

Today was the first day where his speech and feeding appointments fell during the school hours and where I chose not to attend. This afternoon, I got this email from Solly’s speech therapist: Continue reading

There’s No “I” in Team

Parenting a kid like Solly has taught me more than I could have imagined. I mean, I could probably write a book simply listing everything I’ve learned, from medical terms to therapy movements to assistive technology and more.

My biggest takeaway so far is this: it’s ok to disagree with a doctor, specialist, therapist and find someone who is a good fit for your child.

Growing up, we always heeded our doctor’s advice: when I dislocated my shoulder, we took an X-ray and I went to physical therapy; when my adult teeth started growing crooked, it was three years of braces for me. Simple and straightforward. However, what I’ve found over the past (almost) four years is that medicine, particularly when you’re dealing with a unique organ like the brain, is often times more an art than a science. There’s no one correct way to rehab that unique organ.

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Miss Laura teaching us how to handle Solly so we can encourage proper body positioning

It took me over two years before I realized that not all doctors and therapists are created equal, especially not for a medically complex kiddo like Solly. Part of the delay in learning this is because we were insanely fortunate to be paired with the perfect physical therapist less than one month after Solly was discharged from the NICU. Her name is Miss Laura, and she still keeps tabs on Solly’s progress even though we haven’t seen her since we moved away from Washington, DC. What I’ve found in physical therapy is that many institutions approach rehabilitation by setting goals for gross motor skills and then moving a child towards those goals even if they aren’t ready for them. And what I mean by this is a common goal for Solly in the early days was sitting, holding quad position, walking, etc. But, often times, he wasn’t ready for those goals and would grow frustrated with therapy sessions because the therapist was essentially forcing him into and holding a position that he wasn’t physically ready to do. Continue reading

Verbal Or Non-Verbal, That Is The Question

Is your child verbal?

How would you answer this question when you can understand the handful of words that your “non-verbal” child has and know that he can answer yes and no questions with 95% accuracy? Man, oh man, I struggle with this.

Sol’s language center was completely wiped out by the three strokes he had at birth. We’ve always firmly believed that he is not cognitively delayed and that he understood everything we said to him, even though his expressive speech was severely delayed. He started to have words after we did our first round of hyperbaric oxygen therapyΒ and his expressive speech has exploded since we did stem cell therapy back in March. To date, we figure that he has somewhere between 20 – 30 words, has just started stringing 2 words together, and, like Bea, will speak in his own language. (Sometimes I think Bea understands him as I will frequently find the two of them conversing back and forth.) Continue reading

Head of Ring Security

This past weekend, my eldest nephew, Reid, married his best friend, Katie. The wedding party included eleven beautiful bridesmaids, eleven handsome groomsmen, a very sweet flower girl, and Solly as the ring bearer.

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Solly and Reid

My heart soared when Reid and Katie asked Solly to be their ring bearer late last year, especially when I overheard Katie tell him: “Now, Solly, we don’t care how you get down the aisle. You can walk, you can ride in a wagon, you can be carried, we don’t care. We just want you to be a part of our day.” (How lucky are we that Katie is now a part of our family?!) And the inclusion didn’t stop there: every time anyone in their wedding party saw Solly at any of the wedding events and over the wedding weekend, it was “oh, hey Solly, how’s it going?” even though every single person who said hi to him knew it was very likely that Solly would just respond with a “hi” and a wave. This approach to including Solly is how I wish the world would include anyone with a physical or intellectual disability.Β  Continue reading

Lately: On Specialists and Therapies

The other day, a neuromotor researcher asked me to send her a list of all the therapies we are doing as well as the specialists we regularly see.Β  With all the traveling we did and changes Solly went through in the last year, this seemingly simple request was not so simple! After our year of change, in my mind, we really pared down the number of therapies Solly did each week, but our schedule is still pretty full. The biggest difference is that we have more therapies that are fun for Sol and fewer that require him to sit still in a chair.

After racking my brain, here is the list that I sent her:

Continue reading